MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Saturday, 20 October 2012

A week ago, Jane and others were pushing me round the grounds of Blenheim Palace. We were taking part in the annual Oxfordshire MND Association sponsored "Walk to d'feet MND". As last year there were a good number of participants (about 90) and we were blessed with sunny if not balmy weather. The leaves were just starting to turn as you can see across the lake - like Ashburnham Place designed by Capability Brown.

As always with these events, the best thing about them was the company. In this picture I'm being pushed by

our friend Penny whose husband died last year of MND, while on the far right is Matt whose mother died only a few months ago. Talking to me, to the right of Jane, is Jenny Rolfe, the fab OT who works at the MND Clinic in Oxford and who sorted out for me my tilting wheelchairs. To her right is Rachael Marsden, the nurse and presiding genius of the Clinic. They are two of the assets that makes the provision for people with MND in this area so positive. It struck me that part of the centre's secret was encapsulated by the fact that one consultant, the nurse i/c and the main OT were all there on a Saturday in what might be called a work of supererogation, i.e. above and beyond the call of duty. For them it's more than a job, or a career; it's more like a vocation.

Second in from the right here (with the balloon) is Lesley, our indefatigable and endlessly efficient branch secretary. She's one of a group who not only organise such events for us and our families and friends - and, as significantly, is one of those available to visit people with MND from the point of diagnosis onwards. As you'll have gathered from this blog, there is NO way that the professionals, spread as thinly as they are and with resources increasingly squeezed, there's no way that they can respond even to the need of such a rare condition as ALS/MND. So the potential for sensitive Association Volunteers (AVs) to support individuals and families in the frightening reality of the disease is huge. It doesn't always work; personalities may not click. But usually it does.

I must also mention Peter, with the cap on the mini-scooter, with his two glamorous women behind him. He has moreorless completely lost his voice, but he certainly has by no means lost his sense of humour. He keeps me plied with often outrageously non-PC jokes by email. To give one repeatable example which I enjoyed recently:
- An elderly man was stopped by the police around 2 a.m and was asked where he was
going at that time of night.

The
man replied, "I'm on my way to a lecture about alcohol abuse and the
effects it has on the human body, as well as smoking and staying out
late."

The
officer then asked, "Really? Who's giving that lecture at this time of
night?"

The man replied, "That would be my wife." - Occasionally Peter drops in a googly in the form of a serious or uplifting reflection on the meaning of life. He used to be a teacher. I bet his lessons were fun!

Oh yes, and did I mention the afternoon was fun too. At least I enjoyed it. Well, I'd have been ungrateful not to have, being pushed up hill and down dale by a succession of nice women, wouldn't I?

Thursday, 11 October 2012

"Care home staff 'abused elderly': six arrests made

A former matron and five nurses who worked for a care home have been arrested over 'serious allegations' of mistreatment and neglect of 'very vulnerable' elderly residents."

You may remember I was writing about the importance of recognising that all, including disabled people, should be treated with respect (Do not resuscitate) and valued as persons. The Telegraph report illustrates the danger of abuse of the vulnerable, even in places where they are meant to be cared for. The nursing home in question specialises in caring for severe Alzheimer's sufferers, who are, in my view, in the front line for abuse - which, at its extreme, includes euthanasia."Chief Superintendent Richard Bayly, from Lancaster Constabulary, said the 'serious allegations' involved 'very vulnerable, elderly residents' and regarded 'a significant number of cases'.

"He said: 'These arrests are a culmination of a thorough investigation into serious allegations of mistreatment of residents at Hillcroft Slyne nursing home.

"'The inquiry is complicated and we have a team of specialist detectives working on this case who are also offering support to those families who may have had loved ones identified as being allegedly mistreated.'

"In May, Lancashire County Council's social care department made police aware of a complaint they had received about the level of care provided to some residents at the home."

After my "Do not resuscitate" post, a severely disabled friend wrote to me about her own experience"I've been ill for most of the time for the last 3 years, and have spent all too much time in hospital. The last time was in July 2012, and I came across a nurse with a sickly sweet voice, but who bullied me mercilessly. She knew that if I swallowed tablets by mouth I would retch and/or be sick, but refused to use the canula, which had been put in (with much difficulty) on doctors' orders only the previous day. She shouted at me, and refused to use the canula. I became quite afraid of her. I phoned my carer and he came immediately. He managed to put her in her place while remaining entirely polite and calm, but it was a very unpleasant experience. It made me think of the terrible predicament of those who have no one to stand up for them, or who cannot communicate, or are very elderly, perhaps with dementia. It is such a scary situation for all of us."My friend is a lovely person who struggles with multiple disabling conditions with amazingly good grace. Yet even for her the sense of helplessness faced with insensitive caring was enough to scare her, and clearly not everyone is fortunate enough to have a competent advocate to call on in time of crisis. As a country, we really must heed the warning signs of a trend, despite Paralympic euphoria, of diminishing our regard for the disabled. Just over a month ago, there was great optimism that an irreversible change of attitude had taken place. If we are not vigilant, it will be more than reversed: disabled new borns and vulnerable elderly will be regarded as legitimately disposable. Then we will have entered a morally bankrupt "brave new world".

Tuesday, 9 October 2012

As I announced on Facebook we've just spent a couple of nights at Ashburnham Place, near the site of the Battle of Hastings - well, the nearest town is Battle in East Sussex. Neither of us has been there before, so we didn't know what to expect, though we had seen the brief comments on its website:

"For nearly eight hundred years Ashburnham Place was the home of the Ashburnham family. In 1953 the last member of this family, Lady Catherine, died and the inheritance passed to a young clergyman, John Bickersteth. Seven years later he gave the house and the surrounding parkland to the Ashburnham Christian Trust. The purpose of the new Trust was to promote the study of the Bible and the training of people in the principles of the Christian faith. Much of the original house had to be pulled down and new facilities have been added. The Trust continues, under new leadership, to work towards the same goal - encouraging people to come to a personal faith in Jesus Christ and to live their lives in the service of God....

Turner's sketch from the Tate Collection

"The centre is located in 220 acres of beautiful grounds landscaped by 'Capability' Brown, with three large lakes and much interesting wildlife; the area has been designated a site of special scientific interest (SSSI) by the Nature Conservancy Council. Four campsites are used in the summer months by church, family and youth groups. The grounds are not open to the public, but we do consider requests for visits from local interest groups. Visitors are always welcome to the Ashburnham Parish Church, which is located in the grounds."

The artist, J M W Turner, sketched and then painted a watercolour of the Vale of Ashburnham in 1816, where you can see the three-storey Italianate stuccoed mansion in the centre distance. Later it was clad with fashionable brickwork. Sadly during it was damaged following a crash of a fully laden bomber nearby which to the start of dry rot, and the eventual removal of floors.

Turner's watercolour from the British Museum

Well, Gill said she was looking forward to my reflections - so here goes. The first thing to admit is that we were not staying in the big house, but in Carpenter's Lodge where our son and his family have just settled. He's just started as one of two new directors there. We travelled down on Sunday afternoon and arrived in the sun. As you turn in at the imposing gates, you drive through old deciduous woods, past a lodge and then you round a corner and catch a view of the house across the lakes, which no doubt was the first vista Capability Brown wanted to greet you. The trees have now encroached on the panorama, which is a shame, though perhaps in these motorised times we might not linger to admire the view as we should.That evening we joined the community for their Sunday evening celebration. There is something uplifting about joining an international group united in worshipping a God whom they clearly love. The community is international because it includes a good number of young volunteers from all round the world who come to improve their English and to serve God, which they do primarily in looking after the needs of the guests who come on retreat, for conferences or simply for rest and refreshment. From my point of view the worship led by four of the volunteers was refreshing and personal including as it did one of my favourite modern worship songs, "This is my prayer in the desert".

On Monday I was loaned the house's mobility scooter (rather nice all-singing vehicle) and we toured the house and grounds. I must say it's all remarkably wheelchair friendly. The grounds and house are more accessible than any National Trust property I've visited - which is nice since the gardens and grounds are good places to find tranquillity as well as creation's beauty, both God- and man-made. I'm told that there are disabled-friendly rooms with wet-rooms to stay in, which is unusual. I'm hoping to find out more about these facilities since it seems to me that really disabled-friendly places to stay are few and far between.

Andy and Paul, new directors,with the old church behind

It is a remarkable estate, quite near the coast, with 200 acres of parkland and woodland, but it's more than that. I suspect it's one of those "thin" places, sites where the division between heaven and earth seems thinner than normal. Whether that's because of the house's recent history as a praying community, or because of a tradition of faith in the Ashburnham family, or whether because in the centre of the estate, cheek by jowl with house, stands the ancient village church, I don't know. My guess would be it was the last that broke the barrier - rather as T S Eliot describes Little Gidding in The Four Quartets: the "place where prayer has been valid", "the intersection of the timeless moment". I'm not much of a one for "sensing atmosphere". But Ashburnham was for me one place where hope seemed close and the spiritual seemed to matter -"You are not here to verify,Instruct yourself, or inform curiosityOr carry report. You are here to kneelWhere prayer has been valid."

I was sorry to have to leave.(PS I apologise for the photos. I'd left the camera on the wrong setting. So my pictures were overexposed and don't give a true indication of the rich colours.)

Saturday, 6 October 2012

For young people September marked the start of a new academic year, even career. Some universities even begin their "Michaelmas Term" on 9th October, on the presumption, I assume, that their students work much harder or are so much brighter than others that they need far less time to study. Anyway, best wishes to all students and their teachers launched into the most depressing of terms being the longest (16 weeks) term and the increasingly dark days of the year. However for the rest of us also the regular round grinds back into gear, including local MND Association events.

For us, it began a week ago with a meeting at the Holiday Inn with my physiotherapist, Lesley, talking about her work. I know I'm biased, but she was excellent. Clear, comprehensible, and not condescending. One thing she flagged up in response to a question was the possible dire consequence of commissioning. At the moment we have a small expert, if very hard-pressed, team of neuro physios. With competitive tendering there's a danger of going for the cheapest option, which won't be the experienced or the specialist one. If we lost Lesley and her team, it would be a tragedy for everyone with neuro conditions (like MS, Parkinsons, MND) in our area.

Then last night we drove to the Roses' Theatre in Tewkesbury - a long way, but it was for a reason. We were going to hear Pam Ayres giving a performance in aid of the MNDA. We'd had contact because of our shared connection with Stanford in the Vale. She was brought up there and many of her family still live there. As vicar there, I had met her on one or two family occasions. She's genuinely as nice as she seems. She's written a rather good memoir of her early life in the village and then in the WRAF and local firms until her career as a poet and comic raconteur took off after appearing on Opportunity Knocks, in which she was the people's choice. It's called The Necessary Aptitude - which she was repeatedly informed she lacked, up to the point that she uncovered her metier.

I don't think she would reckon herself one of Britain's great poets, but I think you could rate her as the ordinary people's poet. She is a winsome stand-up comic, interspersing her apparent stream-of-consciousness performance with poems and self-aware skill. She has great rapport with her audience. Her performance of Shakespeare was hilarious, and her account of her moment of shame in Singapore (you'll have to read the book!) was very moving. If I had to choose the comic highlights for me they'd probably be her new poetic form, poetry tweets, and her attempts at wearing contact lenses.

At the end, Pam gave a short clear explanation of MND and the purpose of the association, and encouraged everyone to sign the MND Charter *. She's given her fee all to the MNDA, which is a considerable donation. I'm not alone in being very grateful. Moreover I need to acknowledge that although the Oxfordshire branch made the initial contact, all the hard work for the evening was done by the Gloucestershire branch, some of whom you can see below.

So we're back in full swing - Next Saturday Jane will be pushing me round Blenheim Palace grounds on our annual sponsored walk "to dfeet MND" (You can find out about coming or sponsoring here.) We hope for the same beautiful weather we had last year.

* The MND Charter is basically a plea to have even care of MND patients nationwide. Here in Oxfordshire the care and support is brilliant, partly thanks to the dedicated MND Centre at the John Radcliffe, but that's certainly not the case all over the country.

For example, Pauline, a friend of mine with MND, has just put this on her Facebook page:

You couldn't make it up ......Struggling with my mobility with regards to getting to the toilet and in and out of bed I contacted the OTs yet again for some assistance. Almost 2 years ago my then OT put forward to 'the panel' the possibility of me having a standing hoist. This was denied with no proper explanation or assessment despite my continued protestations. Now I am more in need of it than ever though still capable of standing using a 4 wheel walker for 1-2 minutes (performed for toileting, getting in and out of bed and on and off shower chair. The OT came and we discussed hoists, again! It was decided that due to my husband's age and frailty he shouldn't use a full hoist on his own but neither could I (still) have a standing hoist because (this is a new argument because it certainly wasn't the case 2 years ago) I can't sit myself up in bed! (WTF?). That's okay if I'm being put to bed by carers (this only happens 3x a week (at 8.30pm and I hate it)) but what about going to the toilet I asked. THIS IS WHAT YOU COULDN'T MAKE UP....A carer could come at a set time each day, she said and put you on the toilet! OMG, not only am I being 'put to bed' like a naughty girl, now, they're expecting me to 'poo to order'! When I started to cry both OT and physiotherapist just sat there whilst my aged mother tottered over to comfort me. When they qualify these people must enter a vacuum wherein they have compassion and empathy (oh yes and common sense) extracted. I await the outcome with bated breath....

I'm not greatly into the "rights'" culture, but I basically agree with the five aims of the Charter, which says:

1.People with MND have the right to an early diagnosis and information

2.People with MND have the right to access quality care and treatments

3.People with MND have the right to be treated as individuals and with dignity and respect

4.People with MND have the right to maximise their quality of life

5.Carers of people with MND have the right to be valued, respected, listened to and well-supported.

Obviously the more people who sign the charter the more weight it will carry with policy makers and purse-string holders. You can access it here. At the moment it's not that straightforward. Hopefully the MNDA will soon make it more accessible. (MND Charter on-line)